HOME Sweet Home

It feels so good to be back home.  We made it back Thursday afternoon, after spending what seemed like the longest 3 days ever in Boston.  There is nothing like being in my own bed  I swear.  The good thing is though, the trip ended up being very productive, and it wasn't nearly as bad as I had feared.

     On Wednesday morning, LJ had a repeat ultrasound of his kidney so that they could compare it to the one he had a few weeks ago.  After his ultrasound, we had an appointment with urology to discuss both of them.  The urologist was actually very happy with how LJ is doing, and thought his ultrasounds both looked fine.  The swelling in the kidney is not bad at all according to him, and it is normal for children who have transplants.  His kidney is doing great according to his lab work.  Also, LJ had a full bladder during the first ultrasound, which he explained, would make the swelling appear more pronounced, in anyone's kidney.  The ultrasound done in Boston had much less swelling, which was reassuring.   After hearing that, I felt a huge relief.  I was in a panic, dreading this trip for that very reason.  I was so terrified of what this could all mean.  It is so good to know that everything is OK.  The doctor also said that the hydronephrosis tends to improve in young children once they are potty trained, so that is hopeful too.  But, at least he is still good in the meantime.  Thank God.

LJ at the hotel on his way to the doctor.  Too cool to look at the camera

I got a smile!

     While we where waiting for LJ's urology appointment, we stopped to see Courtney, the transplant coordinator.   As luck would have it, there was a Dermatologist in the office with her, and she was able to take a look at these little bumps that just started popping up.  She told us it seemed to be follicolitis, and it could easily be treated with bacitracin cream; so that saved us a trip to the dermatologist at home.  Then, while we where there, we got back results from his stool studies, and we finally found out that he dos have C-Diff, which they are going to treat with a month long treatment of vancomycin.  This should actually put an end to this terrible, awful, stomach bug for my baby.  So all in all, it turned out to be a pretty good trip,  The doctors thinks LJ is doing great, we are going to treat his tummy, and we don't have to come back until October.  He is also back to labs only once a month.  Yaaay!
                                           

                                                           

Bean Town

Here we are in Boston!  It's Day 2 actually, and I am exhausted to say the least.  We have been at the hospital all day, and we gotta do it all again tomorrow.  Its not even the fact that we have had so many appointments, just 2, and tomorrow the same thing.  They are just spaced out so much that we have to be there all day.

Today LJ had to see Nephrology and GI.   The good thing is that all of his labs looked great from a nephrology standpoint.  They said he couldn't have been more perfect from their point of view.

Now GI on the other hand was something that I was more concerned about.  With everything going on with my baby's poor tummy, who knew what to expect.  They want to put him back on the medicine he was just on, the flagyl, for a month this time, but they want to try it along with a probiotic.  The probiotic would go for a few months though.  The thing about that though is that when he was on the flagyl, he had t get blood draws every few days, so that is not cool.  According to the docs, there is also another option, which is vancomycin, but that is much more expensive, and they don't know if LJ can have it because of his transplant.  Either way, any of this has to be approved by renal before it will actually happen.  Another thing is, I have to pay out of pocket for probiotics, which are expensive, so they need to know if this is going to work because I have already tried some that didn't, and wasted my money.  If all of this still doesn't work though, they are going to want my poor baby to have a colonoscopy done, and he is going to have to be admitted to the hospital for that one.  Hopefully, we won't end up making it to that point.  They did say that they would be willing to try imodium, which was my suggestion, because it worked for him in the past, if they can rule out the possibility of any infection.  Of course, I already know that this all started when he was on the amoxicillin, but, I'm just his mother.   So they took some more stool samples today, and some blood, and now more waiting.  Waiting for results, and waiting for the official plan.

On the schedule tomorrow, another ultrasound of LJ's kidney, and an appointment with urology to discuss.  Prayers going up!

It's Our Anniversary!!!

     I can't believe it has really been 2 years since the day I got the call to come to Boston because they finally found the kidney we had been waiting for and my baby got his transplant, 4/17/14.   After 2 false alarms, we finally had the one.   Third times the charm!  The one I had been praying for since the day my son was born pretty much.  My baby got his second chance at life, 2 years ago, and I am so grateful.

     Yesterday we had cake and ice cream at my house, and I got my LJ presents of course, to celebrate this wonderful occasion.  Hopefully, it's the first couple down of many more to come.  I am so proud of my little man.  Throughout everything that he has been through; all the ups and downs, he is such an amazing little boy.   According to some doctors, he wasn't even supposed to be here, but he is.  Two years post transplant, and almost 5 years old.   YOU GO BOY!!!!!   Mommy Loves you more than life!!!!!!

The cake

LJ and his new light sabre 

His face when his saw his presents

My baby looking out the binoculars outside 

Time for cake 

Privacy Please!

Anybody out there who uses MyChart, or any other patient portal to view their child's medical records or communicate with their doctors, might want to read this. 

I'm not sure what all facilities use this app for their patients, or anything like it, but if you use it, my experience may be one you could learn from.   I am a very private person when it comes to certain things that go on in mine and my son's life.  I don't mind sharing things that I believe can be helpful to others, but when I communicate in private, or so I think, with my child's doctor,  I expect that it remain private.  That however, is not the case!

When I dropped LJ off at daycare last week, the nurse there told me that she read through all the messages that I had sent to his doctor about his diarrhea issue.  It blew my mind to hear her say that, but it actually caught me completely off guard.  It was the end of the day, and LJ kept pulling on my leg saying he wanted to go, so I kinda brushed it off, but when I got home is when it really hit me.  So me, being the person I am, I went up to the school the next day, and spoke to a Supervisor, who then referred me to the Executive Director.  I explained my issue to her, and how I could not understand the need, nor the right for the nurse to have gone through my personal messages.   Of course, there was an immediate defense for how I signed over permission for my child's medical records to be released, and he could not attend that school unless I did.   All that is fine and well, but that does not condone, or excuse the fact that she was in my personal messages.   As I explained to the Director, none of those messages pertained to anything going on at daycare, nor were they from myself to her, or vice versa.  That was a violation of my privacy as far as I'm concerned.  After our conversation, she spoke to the nurse about it, and all of the nurses at the school were told not to go into the message portal of any students' charts.  There is now supposed to be a block being put into the system so that it won't even be possible for them to do it if they tried.  This is only for the daycare so far.

I am trying to have something changed, at least for my personal account through the hospital as well.  It bothers me that anyone logging in to his medical records, doctor, or not, can see any message that I send to any doctor.  That has to change.    I have contacted MyChart directly, and they have given me the run around so far, telling me it's not possible for everyone to see.  Clearly it is.  I will get to the bottom of it though.   We make so many sacrifices in the name of convenience, but sometimes, certain things go a little too far.

Please feel free to share this story, or comment!

Unscheduled Appointments

     I just never can get used to those calls from the doctors office when they say they want you to come in the next day for an appointment.  In this case, I get a message in MyChart from the Nurse Practitioner at the Nephrologist's office, saying that the doctor will see my son after playing a game of cat and mouse for about 2 weeks.  Needless to say, my frustration level is at about an 11 at this point.  I had been contacting LJ's doctor's office back and forth trying to figure out if he needed to be seen again before we go to Boston at the end of the month, and had heard no at first, then yes, then not this week, but next week, then we'll get back to you Wednesday afternoon.   Finally, I check my email at 4 o'clock on Wednesday to see, a message that was telling me I had a message in MyChart (the messaging center for my hospital) that said, bring him in tomorrow afternoon after his blood work. The blood work, which he is now getting every 3 days since being placed on this medication to hopefully help with the diarrhea issue, P. S, not much has changed.  At least his blood work has been OK.   Now, I am already on fire because, I forgot to mention, I had called Monday, key words being, I called to ask about the ultrasound from over a week ago at that point.  Here I am , thinking, no news is good news, as my mother would say, but I was wrong.  When I speak to the Nurse Practitioner again, I am told that there is a note in the computer saying that there was moderate hydronephrosis documented.  My immediate question was "Why was I not notified?", to which I got dead silence for some time.  I was then told that since Boston was his transplant hospital, they were waiting to hear back from them as far as what could be causing it, how bad it really is in comparison to previously, and so on.  Basically, in my eyes, it was a bunch of excuses.   I am freakin' out at this point because I don't really know what to think, so I wanted to get in to see the doctor to find out what was going on.  At least to know more than what I did, which was nothing at this point.

Always Smiling!! My baby at the doctor today


When we finally get to see the doctor, of course I have a million and one questions.  I was upset because I had to call myself to find out about the ultrasound first of all.  She said she called me, but when she didn't get me, she didn't leave a message because she didn't want to get me upset without being able to answer any questions I might have.  So you don't try back?  OK, Anyway, after all the apologizing, we got to the fact that she basically feels like she doesn't know enough about the ultrasound to give me much answers anyway, and I am still waiting to find out from Boston what they think about it.  This I won't know until we go there on the 25 of this month.  This is the stuff that gets me crazy.  How is it that I can have questions that go unanswered for so long?  Knowing that he has a kidney that we need to be attentive to, I feel like they drag things on too long, then it will just be like, Boom we need to do this, this and this Today! That's what I have always hated about about both of these hospitals.  Now she did tell me that it's not such an urgent issue as long as LJ is not peeing less, or anything extremely different, but being the mother that I am, and knowing how things do change as fast as they do, I am still nervous.  I have no choice but to wait though.  The thing is, when we get to Boston, I don't know how long they are going to want us to stay or anything, and I only planned to stay one day for his appointment.  Now that is travel, hotel, and nobody has told me anything about any other appointments.  So come Monday, I will have to be tracking everybody down to find out if I need to be pushing for a longer stay, and changing reservations.  It is never ending I swear. 

Getting Ready for the Week

     It's Sunday again.  How fast does the weekend seem to fly by, and it's time to get back to business.  Back to reality.    Last week as a doosey, and I'm sure this week will be nothing less.   I thought we c were getting closer to figuring out the cause for LJ's diarrhea, but that turned out to be a dead end.   It's crazy that I have been losing it trying to get to the bottom of this, and now this whole thing with my baby's blood pressure just popped up outta no where.  Oh, and with that one, it actually turned out that it wasn't because of  is Prograf, his level was actually fine.  Since that wasn't it, the doctor wanted to have an ultrasound done.  We had to come in to the hospital basically everyday last week, so much for not being admitted right?!  Actually though, I would rather that than having my baby have to lay up in a hospital bed any day.  Thank God for all the little blessings, no matter how tiny they may seem sometimes.  Just being able to sleep in my own bed, or cuddle next to him, and not have nurses coming in to check vitals in the middle of the night is a blessing.  Some people don't understand if they never been through it.  I have lived that life for much longer than I would have ever liked to, so any time it can be avoided, I will definitely opt for yes!   We got to be home for my nephew's birthday, and Easter.

That smile......It's EVERYTHING!!!!

Now we just have to wait to find out the results from the ultrasound, so we can see why my baby is having high blood pressure again.   He hasn't had to deal with this since before transplant.   Anybody that know s me, know that I am trppin' over this one.  Of course, I am always thankful for the fact that my angel is being his usual tough self.  To look at him, you would hardly ever know the struggles that he deals with.  It breaks my heart.  I swear, I wish I could just take all his pain for myself.  He is such a fighter.  They prescribed him a low dose of medication for his blood pressure for now, and we will find out more this week.  For the diarrhea they actually prescribed something too.  It's a medication to treat an overgrowth of bacteria, like when probiotics aren't enough basically.  Since none of the tests show anything, it's kind of all they could come up with.  I'm supposed to give it to LJ for 14 days.  The worst thing about it is that it messes with his immunosuppressant levels, so I have to take him to get the levels checked every 3 days.  I hate that.  Getting my baby's blood drawn that often like he;s a dang pin cushion.  I hope this medicine helps.   My patience is wearing extremely thin.  I'm just so glad that he is not too bothered by all of this...yet.   Boy, oh Boy, I'm keepin' my fingers crossed, and my toes too, lol.